In March 25, 2014 my brother woke up feeling tired and losing strength from arms and legs. In matter of hours his condition deteriorated to a point where he no longer could walk. He was admitted to the hospital and was diagnosed with GBS. He was two weeks in ICU on a ventilator and a feeding tube. He is paralyzed from the neck down. After that, he was discharged to a long-term acute hospital, in which he remains today, in the same condition. He hasn't progressed any movement or gotten off the ventilator. During this period, he has been in and out of the hospital for serious infections. I have been told that they want to move my brother out of state because of his insurance and because lack of progression. My brother is in full Medicaid and a permanent resident of the USA. The doctors have told me that this might be a permanent condition and I'm better off if I take him home. I'm scared because he's really ill to bring him home or to transfer him away from NM. I'm positive he has GBS but the doctors are giving up on him. What can I do? Does anyone know a place where he can be transferred for treatment? I don't want them to transfer him to a skilled nursing home where he will be forgotten. Thanks.
There is an inpatient rehabilitation at Baptist Desoto, Miss.
If you are in New York...I know when my father went down with GBS the crew in Rochester Medical Center, Rochester were amazing! (and knew what they were talking about).
Have you looked into Mayo Clinic?
Magaly,
Did your brother have treatment with IVIG? I would insist on a consultation with a specialist at least before transferring him anywhere.
I got really good care at 2 different skilled rehab care centers. Have you gotten together with the discharge coordinator?
I'm glad he has such a good sister!
Molly
Hello Megaly,
My sister was also diagnosed a week before your brother and I can sympathise completely with you. However I feel that your brother has not been receiving the right treatment. He needed the IVIG immediately. What medication is he on.
Thinking of you both keep
Us posted.
Anna
Try Vanderbuilt University in Nashville Tennessee. They are GBS trained. They can provide the best information to assist you. I went to Mayo Clinic and I regret not going to Vanderbuilt. Mayo can diagnose but Vanderbuilt can treat you.
Hi Magaly,
If they have given IVIG on time then you can now move to physiotherapist. I am surprised that why your doctors(Neurologist/Physician) have not suggested all this? Even in hospital physio should come everyday for respiratory /chest exercises. Anyway if IVIG has given then you should concentrate on physiotherapy.
Regards,
Chandan
I will look into that place if I need to. Thanks a lot.
Evelyn Thomas said:
There is an inpatient rehabilitation at Baptist Desoto, Miss.
Mayo Clinic? I will look for this clinic. Thank You
RAC_Cherry said:
Have you looked into Mayo Clinic?
When my brother was first diagnosed with GBS they spoke to me about the IVIG, but I'm not sure how many doses they gave him. I don't know why he didn't respond to it the first time, but he is now on IVIG again. Do you think it's too late?
Molly said:
Magaly,
Did your brother have treatment with IVIG? I would insist on a consultation with a specialist at least before transferring him anywhere.
I got really good care at 2 different skilled rehab care centers. Have you gotten together with the discharge coordinator?
I'm glad he has such a good sister!
Molly
The IVIG he received at the hospital didn't work out. Now he's on IVIG again but I don't know what to expect because the doctor said that my brother will keep receiving IVIG doses up to 6 months.
Anna banana said:
Hello Megaly,
My sister was also diagnosed a week before your brother and I can sympathise completely with you. However I feel that your brother has not been receiving the right treatment. He needed the IVIG immediately. What medication is he on.
Thinking of you both keep
Us posted.
Anna
Is Mayo Clinic also in Tennessee?
Heavenboundminister said:
Try Vanderbuilt University in Nashville Tennessee. They are GBS trained. They can provide the best information to assist you. I went to Mayo Clinic and I regret not going to Vanderbuilt. Mayo can diagnose but Vanderbuilt can treat you.
I am starting to have doubts as to whether the hospital treated my brother with IVIG. But thank God he is on IVIG once again and will be for the next six months if needed. Any advice?
Hope to hear from you soon
Chandan said:
Hi Magaly,
If they have given IVIG on time then you can now move to physiotherapist. I am surprised that why your doctors(Neurologist/Physician) have not suggested all this? Even in hospital physio should come everyday for respiratory /chest exercises. Anyway if IVIG has given then you should concentrate on physiotherapy.
Regards,
Chandan
Hello Magaly,
If it is difficult to go out of state, I would look for a university hospital associated with a medical school in NM. You should be able to find good neurologist there. Have the doctors mentioned plasmapharesis? This is additional treatment. I wish you a successful outcome for your brother. I will keep him in my prayers. God bless you for your care and concern for your brother.
Hey Magaly,
IVIG is to be given based on the body weight of patient. In some cases doctors recommends “Plasmapheresis” treatment instead of IVIG. My wife has been given total 135 grams (25+35+25+25+25) IVIG doses in initial 5 days. After then till one month she was under observation of doctors & then has given some tablets like Gabapentin 300mg BD, Tab Adesam 400mg OD etc. During observation they were checking Na & K level daily. I think way of treatment may be varies from patient to patient & based on type of GBS.
What doses of IVIG per day will be given till 6 months to your bro by his doctors? After knowing this, you may consult the details with some other specialists for second opinion & if required you may go for third opinion as well. There is no harm in this rather it will make you understand the things clearly.
All the best & Hope for his fast recovery.
Chandan
Hey Chandan,
I spoke to my brother's Doctor and she said that she had talked to the neurology Doctor that diagnosed GBS on my bro back in March. The neurology Doctor said that they had given doses of IVIG for the first five days he was at the hospital and of course based on his weight. My brother didnt make any improvement. And to make matters worse he still is on the ventilator. Anyway on Saturday 6-7-14 the Doctor started the doses of IVIG for three days. Doctor said that if we dont see any progress in two weeks, my bro is going back to the hospital for another treatment. (plasmapheresis). He is also in gabapentin and hydrocodone for pain.
Thank you for your concern.
Chandan said:
Hey Magaly,
IVIG is to be given based on the body weight of patient. In some cases doctors recommends "Plasmapheresis" treatment instead of IVIG. My wife has been given total 135 grams (25+35+25+25+25) IVIG doses in initial 5 days. After then till one month she was under observation of doctors & then has given some tablets like Gabapentin 300mg BD, Tab Adesam 400mg OD etc. During observation they were checking Na & K level daily. I think way of treatment may be varies from patient to patient & based on type of GBS.
What doses of IVIG per day will be given till 6 months to your bro by his doctors? After knowing this, you may consult the details with some other specialists for second opinion & if required you may go for third opinion as well. There is no harm in this rather it will make you understand the things clearly.
All the best & Hope for his fast recovery.
Chandan
Hi Rosemarie,
Yes I believe it will be a difficult process to move him out of NM, I rather keep asking the neurologist for answers.
The Doctor did mentioned plasmapheresis as our second step. Wish I can see some improvement soon.
A thousand thank you for your prayers.
Rosemarie kaupp said:
Hello Magaly,
If it is difficult to go out of state, I would look for a university hospital associated with a medical school in NM. You should be able to find good neurologist there. Have the doctors mentioned plasmapharesis? This is additional treatment. I wish you a successful outcome for your brother. I will keep him in my prayers. God bless you for your care and concern for your brother.
My dr was AMAZING. His name is Dr. Stephen Yang in Norman, Oklahoma. He is the medical director of the hospital there. His partner, my other dr. Is Dr. Michael Merkey. They have been my saviors. Dr. Yang is just …I don’t know, the best dr I’ve ever had. So caring and EXTREMELY KNOWLEDGABLE. I can’t speak highly enough of them. The nurses at Norman Regional Hospital were miracle workers. I was on Medicaid during my 2 month stay. I everything works out well. The recovery rate is excellent. Don’t lose hope 
Thank you Jessica. Did you get IVIG treatment at the hospital?